For many years, I worked as a Program Coordinator and Family Caregiving Consultant at the Alzheimer's Association and Del Mar Caregiver Resource Center. During that time I wrote a monthly newsletter for families taking care of loved ones with progressive incurable memory loss and dementia. Those articles are now a book, and this blog was created to share it (and any new articles I write) with all of you.

Friday, November 6, 2009

When life is chaotic it can feel extremely difficult to find a calm center to relax into and let go. I think this painting I did recently epitomizes that. Too much happening to feel "meditative". But it is a mandala. Breathe in and focus on the very center.

Or close your eyes and begin again.

The mandala above is a challenging place to begin a focused meditation practice. I can't do the practice I suggested above with this piece myself. But that's why I chose it for this article. Living with someone with dementia is like that. The chaotic disrupting influence of the dementia patient's fractured thought process and the worry, frustration and seemingly endless series of problems creates a backdrop that screams for attention even when you find a few minutes of "peace" just for yourself.

Some things in a caregiving situation take a lot of time to work through. Throughout my book I offer lots of suggestions caregivers can do to make things go better. But what about those things that can't be improved? You know what I'm referring to: the endless repeating questions that you just answered 10 minutes ago, finding the roll of tin foil in the refrigerator along with the unwrapped meat that mom insisted on putting away, the obsessive paranoia, the accusations that someone broke in and stole the purse you know will someday show up someplace weird. The list gets longer all the time and no well-meaning guidebook or caregiving professional has an answer for how to deal with it all.

It's natural to obsess on a situation that is this upsetting. And if there IS something you're overlooking -- maybe Mom's medications need to be adjusted? -- it's wise to get a professional opinion.

But, I know, sometimes you've done everything you can think of to do and the craziness doesn't end. Today I had an insight into this. Just going away, closing the door and obsessing on how much you hate the situation you're in does NOT make it better. :-) Yeah, it was an insight. . . or rather a reminder to be in the present moment. In this perfect moment in time there is no dementia patient in the room. In this perfect moment there is nothing going on that can't wait until someone (not necessarily me) returns.

By really being in the present, I can breathe and return to a feeling of peace myself.

Monday, October 19, 2009

An old counselor friend of mine from India, who I lost touch with years ago when she moved back, had an enormous impact on the people she worked with when she lived in the United States. Her insight into the U.S. national psyche is that most people she met didn't feel good about themselves. Even worse, this was amplified if they were sick, disabled, unemployed or struggling. She took to asking her clients to lie down while she sat beside them and held their hands. She would tell them to just breathe and when they would protest that they weren't getting "enough work done" in their session with her she'd tell them to think of themselves as a young infant -- a newborn, unable to move or talk, or even lift their own head. And she would say

"Did your mama love you any less for that? No! She was so excited to have you, to welcome you into her life, to just hold you and look at you and smell you! She saw you as a perfect miracle when you were just born and unable to do anything but lie there, breathing. And she was thankful for that."

"Just breathe. You are of value to the world just being here. You are a miracle. You are loveable. You are welcome on this planet. You belong."

"Think of yourself as that little newborn. You are still that same child. And nothing changes that except what you have been taught to believe."

In this video is a graphic example of how valuable a being can be just lying there breathing. It's a tribute to Baxter, a dog who brought joy and comfort to people at the end of their lives even though he couldn't do anything anymore himself but lie in their beds, be held by them and lick their faces.

He died on Friday, October 16, on my birthday. I didn't know him personally but I know he is deeply missed.

Saturday, September 19, 2009

In my work as a family consultant I frequently thought my clients could benefit from Melody Beattie's best-selling book Codependent No More. It was written with family members of alcoholics in mind but, really, anybody who lives awhile with a person prone to demented behaviors whether it's caused by alcohol, drugs, mental illness or a dementing illness is in the same boat. We're all attempting to cope with the chaos and pain such a situation causes and we frequently develop some pretty intense coping behaviors in which all our attention gets sucked into obsessing about the person who is creating it. It's natural, it's human but it's damaging just the same.

I recently reread this book after not thinking about it for many years. It still holds up and I recommend it for the chapters on how to focus on yourself without guilt and work with your own anger, grief and pain. You may not be able to walk away as might be recommended for someone dealing with an alcoholic. Caring for a person with a dementing illness typically isn't thought of the same way. But please do take seriously the importance of cultivating detachment, a sense of humor, and time for yourself. It makes all the difference!

Wednesday, August 26, 2009

This may be a controversial article, especially since as far as I know nobody has done studies on this phenomenon to date. Certainly, living with someone with dementia can create codependency. That was the heart of my practice when I was a caregiving consultant. But nobody that I know of has written about the case in which the disease goes the other way around.

First, let's try to define codependency. This is a term very familiar to those in Alcoholics Anonymous and Al-Anon to describe the dynamic that frequently occurs between the alcoholic and those who have to live with one. Basically, the codependent person gets trapped in a system of trying to compensate for the alcoholic's behavior in a variety of ways—everything from constantly monitoring how much a person drinks to covering for them when they've drunk too much. It takes constant vigilance to cope with being in a relationship in which a significant portion of the day is spent avoiding or coping with the aftermath of giving in to an addiction. There's no criticism intended in this description. But the inevitable upshot of the dance that occurs enables the alcoholic to continue their dysfunctional and dangerous behaviors because they never wind up taking responsibility and living with the consequences of their own actions.

Unfortunately, the codependent is usually just as addicted as the alcoholic. They are addicted to being needed, to being the competent one, to being the one who "really is in charge", etc., etc. And it's not just family members of alcoholics who wind up adopting these addictive coping behaviors. Anyone who grew up with a parent with any kind of disorder that made them undependable or even a little dangerous will have tended to develop a number of behaviors meant to help control the crazy circumstances they live within. Children of abusive parents and those with mental illness are a prime example. "What do I have to do to keep dad from hitting me?" "How do I handle the fact that mommy isn't making us dinner?" Children who live in these circumstances can become super-competent. That's the good part. The bad part is that they become terrified to do anything else.

A codependent personality always has their attention on someone else. In my caregiving practice I would say "How are you?" and nine times out of ten whoever was sitting in front of me would tell me about their Alzheimer's patient instead. Seriously. I'm not exaggerating. I met with hundreds of family caregivers in a year. Most of them couldn't answer the simple question of how THEY were without being asked twice.

Every once in awhile a caregiver would say "My mom was always the one everyone depended on. She was the caregiver for the whole family. She took care of both her parents until they died. She took care of my mentally ill sister. She took care of our grandparents and my cousin Mary, too!" Now she's finished with her caregiving duties and what happens next? She can't even enjoy it because now she's been diagnosed with dementia, too!"

The first time I heard that story I felt bad for the person involved and thought "how terrible!" The second time I heard it from a different caregiver I thought "that's sad and how interesting that it's happened here, too." Then I heard it again and then a fourth time. It wasn't the most common story I heard. THAT story was "Mom was perfectly alright until dad died!" But it was a variation that made me wonder.

Right now I'm living with someone who has such acute codependency behaviors that she worries and talks about other people —and ONLY other people—all day long. ALL DAY LONG ALL THE TIME. She does not have Alzheimer's disease. But she can't concentrate on her own interests and things she wants to do at all. She leaves food on the stove to burn while she takes care of a stranger's problems on the phone—even a telemarketer gets her undivided attention. She loses things every day. She forgets things that she "cares" about all the time. But not other people. Other people are the only thing in her view.

If you were to step into this situation and see it from the outside you would see behaviors that smack of dementia. But her family members say, no! She's been this way most of her life. She's always been the caregiver. It's just a little worse now because she doesn't actually have a person who really needs caregiving these days and she does have a little age-related memory loss that contributes to the problem now. She WANTS to be caregiving! She's constantly getting into other people's business and attempting to do so until they get mad and tell her to go away. And she can be extremely engaged and competent when she gets set loose. But without it. . . she doesn't know what to do, she gets a little batty, she withdraws her attention from life and acts out addictive behaviors like constant TV watching on her own. And she acts like a little girl who needs watching over. . . which was probably the truth when she believed she needed to do the caregiving she no longer knows how to do without.

It's what I suspected when I worked for the Caregiver Resource Center. I'm seeing it acted out in front of me on a daily basis now. Give a person with "dementia" a job where they feel like they can take care of someone else and many of them come back to life. I heard about that time and again. I only wish I knew how to help this person and those of you dealing with someone like them now.

Thursday, August 13, 2009

Note to spammers who intend to leave vicious comments about the evils of Socialism and "Obamacare": I moderate all my blogs. Don't waste your time here.

Healthcare reform is THE most important thing on the national agenda right now. I burnt out on my last job working with caregivers of people with Alzheimer's and other dementing illnesses NOT because of the sadness of illness and death. It was the stories of people going into bankruptcy and facing financial devastation in addition to the heartbreak they were going through that got to me. Now the job I had at that agency might not even exist anymore. The California legislature just cut that agency's funding by 73%! Now even the inadequate level of care we were providing there won't be available. We need reform NOW!!

Tuesday, July 21, 2009

In my email today I received an email from an organization called "Organizing for Healthcare" that included the video on this blog. I know not everyone who comes across this blog is an Obama supporter but organizing to defeat healthcare reform in the name of "crushing" Obama is as low as it goes.

I used to work in the healthcare field as a family consultant for the Alzheimer's Association and later for a nonprofit caregiver resource center in Santa Cruz, CA. By the time I left that line of work I couldn't stand listening to the stories anymore. . . but what I couldn't handle is NOT what you might think. I could listen and support people who were seeing their family members and friends deteriorate, lose their minds, and die. I could handle the disease and death. What I hated about this work was the devastating effect taking care of their loved ones had on these people because of the horrible lack of financial and hands-on support we allow to be acceptable in this country. Elderly people were doing 24-hour a day caregiving without back-up! You can't do that as a young person. There comes a time when you NEED to sleep, eat and do basic tasks of everyday living. You can't do this kind of caregiving without support!

And paying for help is more than most people could stand. People were in my office every day begging me to tell them how to keep from going bankrupt and I didn't know. That's what got to me. The utter disregard for human value and human life.

Meanwhile the drug companies who supply the pharmaceuticals their family members were talked into thinking they needed at several hundreds of dollars a month are getting fat. The pharmaceutical industry is one of the top 2-3 most profitable industries in the world, reporting profits of 100s of billions of dollars per year. Profit, by the way, is what is left AFTER a company pays for the research and development the drug companies claim they need to be paid so much for. Don't be fooled by the games they have been playing. Record profits were reported after Bush signed the most recent Medicare drug benefit "reform" bill. That's how insane our country has been—steal from the poor to fatten the already unbelievably rich! This is worse than insane—it's criminal!

It's also a big piece of what has been bringing the economy to its knees. Big multinationals allowed to run amok, taking everything they can get without regard to anyone else. 100s of billions of dollars of profit—every year—while people we care about are losing their homes and having to make the choice between paying for medications and having enough to eat.

Saturday, May 23, 2009

When I was a Family Caregiving Consultant people who had not lived with their elderly relatives in years would come to me in a panic about behavior that smacked of dementia. They had a family gathering at the house, came for a more extended visit, or even needed to move in together for a particular period of time, and what they saw frightened them.

Now my partner Paul and I are temporarily living with his elderly parents. Neither one has Alzheimer's Disease. Both have been getting by but what we're seeing is throwing my earlier client contacts into a different light.

I remember hearing: "My grandmother stays in her bathrobe almost all day long!"

Yep. Occasionally, I do, too, on my day off when there's no one around to see me do it. If grandma has been living on her own and is "on her day off" all the time, why shouldn't she do what makes her feel comfy and cozy?

"Mom takes hours to get dressed or make dinner!"

Yep, why not? There's nothing to hurry for.

Now, I'm not going to say we haven't seen behavior that completely freaks us out. One of Paul's parents has judgment lapses that would get her declared "incompetent" in an instant if this wasn't a lifelong pattern of decision-making. "She's always been like that!" I hear again and again. "It just happens more now. She doesn't care about those things and never has!"

In context, it's just a progression of the same old thing. Jumping in fresh or after a long absence, the progression make no sense. It's crazy! It's "dementia"! We have to do something!

And maybe you will have to intervene sooner or later. After all, there has been an increase in these behaviors. And there is at least age-related memory loss.

But trust me, the parents won't feel that way. They've been compensating for these changes for a decade or more. "We've gotten this far," they think. "What the hell are you so worried about? Big deal, if I leave a pan on the stove. Haven't you ever done that? Big deal, if I go to a party and forget my teeth! I've done it before! And yeah, I even bounced a check or two this month. Stop snooping into my business. (You have no idea how many times I did that when I was younger, too!)"

Most people's parents handle their aging with an acceptance and flexibility their children can't imagine. Things change gradually, they adjust, they make do, they adjust some more. But then there's one last adjustment and things fall apart. That's when the kids can step in. It's nice if you can plan ahead for that. It's even better if the parents will help you help them before things fall apart.

But they have to be willing to allow you to be involved. Before then, it's a terrible interference into a life that's being independently, and even somewhat gracefully, lived.

Saturday, April 11, 2009

I used to work as a Family Caregiving Consultant for the Alzheimer's Association and later for Del Mar Caregiver Resource Center in Santa Cruz, CA. Conflict resolution was one of the most challenging aspects of long term family caregiving -- so many factors to be worked out, and such committed and heartfelt views. Here are some excerpts from an article I wrote on the subject back then. A new version of this can be found in my latest book, The Spiritual Journey of Family Caregiving. The book can be found both on my own website and though my shop on Etsy.com.

----

Sometimes when I work with families I think of my clients as being on a see-saw. One person in the family voices a very strong opinion about what HAS to happen and another family member insists in an equally loud voice that he or she wants the opposite. The balance of power wildly swings back and forth until one person falls off and the other person (merrily?) goes on their way doing exactly what they want without interference. (Then they come to complain to me that no one in the family "gives a damn" about the person they're taking care of so they have to do everything!)

When I was a kid my friends and I liked to play the see-saw game where the idea was to learn how to keep the see-saw in a balanced position. This was possible but very hard to maintain sitting way out at the ends. But as we learned to move our seats closer and closer towards each other we would eventually get to the point where we could sit in balance with almost no effort at all.

As an adult I forgot the see-saw game and I certainly never applied it to the game of life; but if the laws of physics are, in fact, the laws of nature, then why wouldn't they apply to interactions between people and not just interactions between objects? Let's explore that concept in the arena of conflict in general and then apply it to family caregiving. I'll start with an example from my life.

When I was in my early 20's I had a conversation with a wise elder of the Wampanoag Indian tribe in Massachusetts that made a lasting impression on me. I wanted to change the world, was a staunch vegetarian, and believed that how I lived and the food I ate (or didn't eat) was an integral part of my overall mission. Yet I couldn't understand why my family and many other people rejected my behavior with such vehemence —after all, I was on the side of what was right and good, wasn't I?

Manitonquat said he admired the motivation behind my choices but believed strongly himself that the extremity of my stance was counterproductive. His choice was to teach the sacredness of all things, ourselves included, and to help people feel grateful to the animals and plants that gave their lives for our sustenance. He wanted to help people love the earth and make sure to treat it well regardless of what one ate. He believed that if he could help get mainstream Americans, through love, to only eat as much meat as they needed and to start by experimenting with other yummy protein sources one day a week it would have a much greater impact than converting a small group of people to become total vegetarians (which might not be a sound choice for the planet, in his opinion, anyway).

Now, of course, I didn't really understand what he was talking about until many years later when his words came ringing home. I chose to give up being a vegetarian to cope with serious health concerns and couldn't believe the condemnation I heard from my vegetarian friends for "giving in." Their polarized stance made me feel unloved and angry because I realized if they couldn't support me in a life choice that had an obvious and immediately beneficial impact on my personal well-being, how could they ever expect anyone else to respect their (my old) perspective about what was best for the well-being of the planet (i.e. all of us)? The damage inherent in polarized politics became painfully apparent to me in that moment, as it has quite often in recent times. Now, as a family consultant, I see the impact polarized positions create in the lives of caregivers and, ultimately, in the lives of the people they care for.

On the polarized ends of the see-saw are always two people who are absolutely commited to what they believe is right; yet, it is a rare moment when I see people acknowledge that their commitment is a beautiful thing they have in common! In fact, the reason people often take polarized stances is to counterbalance an extreme position on the other side. Their commitment to justice and fair play, if not love, is what creates the imbalance AND it is that very commitment that can turn things around if they apply the laws of nature skillfully.

Remember, the see-saw game? The way to create balance easily without taking extreme positions is for both people to move closer together. You have to look for sources of commonality and learn to acknowledge what is right about each other's perspective. This is easier said than done but if people didn't have the goal of making things go well (at least from the perspective they see things from) there wouldn't be an argument in the first place. We all want things to go well -- hooray! -- let's see how that can be done.

The most charged and most typical family argument I see every day is the one around the decision to place mom or dad in a nursing home. One sibling, usually a devoted daughter, insists that mom (it's usually the mother) should get to live at home to the bitter end no matter what it takes while other family members believe a nursing home or residential care facility is a better choice. The one who wants mom at home will often say the others obviously don't care about mom—mom always said she'd rather die than be placed in the nursing homes she remembers from her childhood -- and the right thing, the moral thing, is obviously to keep her at home. The other family members feel condemned—they know mom might have a difficult emotional transition to make—but they also see how full-time caregiving is destroying the life of the one who is primarily in charge and, for a wide variety of reasons, they can't or won't do what little sister has done.

So they express themselves in a polarized way to counter the criticism they feel: "No! You're wrong! You're not doing a good enough job! Mom would be better off with her own peer group with trained professionals taking care of her needs!" They believe this is a loving stance, a statement of how much they do care for their parent, but it doesn't come across this way.

Neither side feels heard, both sides feel condemned and unsupported, and the impasse remains in place. What usually happens is the one who wants mom home insists on doing it no matter what and, because other family members don't agree, she gets no help. The breach in family relationships that happens as a result is often never repaired.

But what would happen if one person came closer to the middle of the see-saw and said, "I hear how much you love mom and how much you are trying to meet her needs. Tell me more. How did you come to believe this is the best solution?"

If one person felt truly heard, loved and acknowledged wouldn't they eventually be curious about why their so very loving sibling believed the opposite? Old family arguments and long-standing roles and dynamics obviously play a role in this but often the simple skill of learning to listen when everything inside is screaming "NO! LISTEN TO ME!" makes the biggest difference. Then, of course, it's important to take your turn so the reasons behind your stance are heard as well but that often has to come second.

Then what? Well, I've seen so many different solutions to this particular impasse I find myself amazed at the levels human creativity can achieve when everyone is in alignment with the highest good of everyone involved. If little sister is exhausted by being the primary caregiver and big sister can't help because she lives several states away but is willing to help pay for a nursing home maybe that money could be used for respite care instead. Maybe younger brother who is too emotionally distraught around his parents to want to be involved can be convinced to handle financial arrangements or caregiving responsibilities that don't involve hands-on care. Some people choose to use a nursing facility but come and take their relative out for a walk or a treat every day. Maybe if little sister met Mary, the friend of the family who LOVES her assisted living arrangement, she wouldn't feel so bad about helping mom adjust to a new home. Maybe if mom visited Mary and joined her for a meal and activity session she would suggest moving herself. (I actually HAVE seen this last scenario many more times than once!) But before any of these possibilities can happen, people have to be willing to move their seats closer to the center of the see-saw.

Monday, March 30, 2009

Recently a good friend of mine, an elderly woman we'll call "Mary", was contacted by Wells Fargo Bank. She consented to speak to the "nice man" on the phone right away-- after all this was her bank, could something be wrong? No, but after several minutes of chatting with the person she thought was a bank employee she had been talked into allowing Wells Fargo to deduct $25 a month from her account for an insurance policy she didn't want.

I was there when it happened and said "Mary, why did you do that?! Why would you buy insurance you didn't want?"

"Oh, don't you worry about a thing" she said. "It's free the first month! And when I get the paperwork I'll just cancel it. The nice man said I could do that any time."

"But why would you say yes to this in the first place?"

"Oh," she said. "You know those poor Wells Fargo people have a 'quota' to fill, don't you? If they don't sell so many policies a month they could lose their jobs. I couldn't let that happen!"

I was flabbergasted but she assured me that she would get a notice from the bank and when she got it she would cancel it, so I stashed the experience in my memory bank, in case it should matter some day, and let it go.

Well, the paperwork either never came or didn't look like what Mary had expected. She has a vague recollection of getting something from AIG but she "knew" she hadn't bought anything from them so she threw it away. Three months later both of us had forgotten all about the insurance buying incident and Mary found herself unable to buy groceries at the end of the month because $50 she counted on was "missing" from her account.

Now, luckily, Mary is not so demented that she didn't notice what was wrong and immediately called the bank. She only has age-related memory loss and perhaps some misguided judgment. Wells Fargo promised to cancel the policy and, hopefully, that will be the end of it. But what if Mary wasn't that on top of her bank account? Could this even happen to you?